On an illness invisible inside and out

By: Jenny Marie

In January 2017, a film called Unrest premiered at Sundance. It’s a documentary about living with chronic fatigue syndrome (aka myalgic encephalomyelitis or “CFS/ME” as shorthand for the condition. ‘Yuppie flu’ if you’re feeling unkind). It was, rather impressively, conceived and created by Jennifer Brea, a CFS/ME sufferer.

I’m particularly excited about this documentary and any attention it receives in the press. I was diagnosed with CFS/ME in late 2016 after a long period of baffling physical ill health. The world quickly becomes a very lonely place when you join this rather miserable club.

CFS/ME is what I call a non-diagnosis because it’s the absence of another diagnosis. It’s the diagnosis a doctor will give you when they’ve given up on all the other possibilities. Strictly speaking, people like me are in perfectly rude health. Our blood tests show healthy blood count, B12 and other vitamins/minerals, organ functions, no diabetes, no celiac disease, healthy thyroid, etc., etc. Invasive pokings and proddings (sigmoidoscopy and more than a few latexed fingers in my case) reveal nothing.

It’s difficult to explain exactly how much despair can come from test results that declare perfect health over and over again. This is because the symptoms remain…. Exhaustion, indescribable fatigue, brain fog, physical discomfort or pain, sensitivity to many sensory stimuli, and more. No one can see these symptoms, and there is no blood test. We just need everyone to believe us.

The UK’s National Health Service uses the National Institute for Health and Care Excellence (NICEguidance when diagnosing and “treating” CFS/ME. The treatment program for most sufferers is based on a paper published in The Lancet in 2011, reporting on a trial comparing adaptive pacing therapy, cognitive behavior therapy, graded exercise therapy, and specialist medical care in CFS/ME sufferers (or shorthand “PACE,” ironically).

The PACE study concluded that sufferers should be treated with graded exercise therapy (by the logic of building up stamina) and cognitive behavioral therapy (by the logic of challenging our “learned behaviors”). Maybe you can see where this is going?

I can tell that my doctor feels bad for me. She’s compassionate, and it’s hard not to be when I cast such a sorry figure each time we meet. I’m lucky that she cares enough to dedicate 15 minutes of time to me during each appointment. All she can offer me is pity when all I really want is help. But what can she do but follow national guidelines? And when “science” believes that this condition is essentially psychosomatic, very little biomedical research is conducted compared to other diseases and conditions.

Medical professionals, if they believe you, will draw you in with the promise that you aren’t alone; an estimated 17 million people in the world suffer from CFS/ME. But once empathy has drawn you in, the news that your own body (mind) is mutinously manifesting these symptoms is quite a slap in the face. My own doctor offers me CBT and the advice that I don’t over-rest, but rather build up my stamina with increasing levels of exercise.

It feels like she is trying to talk me out of a broken leg.

I’m not the only one who feels this way. The PACE study has been criticized by sufferers for a long time, but has only very recently started to be questioned by experts within the field.

As a worldwide community of CFS/ME “diagnoses,” we are both a menace to practitioners of medicine, and a lifeline for each other. This condition destroys friendships and relationships if permitted to, despite our best efforts. It is invisible internally and externally. Not even our bodies can offer up the evidence needed to validate the way we feel. When we discover something novel about our friends, family and loved ones, some will believe you, and some will not.

A near-lifetime of mental health problems have muddied the waters of my diagnosis. But regardless, it’s vital to trust in your own judgement and knowledge of your own mind, body and symptoms. Remember that you are the expert on you.

I recommend downloading a mindfulness app; spend ten minutes once a day with your thoughts. Don’t deal with them, judge them or hide from them. Simply acknowledge them and be aware of how your body and mind feel. When doctors tell us our body is conspiring against us, truly knowing how we feel becomes ever-more valuable.

I recommend seeking out those who will respect you and your own experience of being in the world.

I recommend pacing yourself and carefully managing the currency that is your physical and mental energy. You are free to choose how you spend it, whether on yourself or others.

Most of all, whatever your invisible illness may be, I recommend practicing self-compassion wherever possible. Be gentle with yourself, because tough love is likely to be the prescription when tenderness is closest to the cure.

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